Resources and Takeaways - 2021 VIRTUAL PATIENT SYMPOSIUM - Kidney Cancer Association
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2021 VIRTUAL PATIENT SYMPOSIUM
Resources and
Takeaways
1Thank you for joining the Kidney Cancer Association’s
2021 Virtual Patient Symposium on September 17-18,
2021. Here are the key takeaways and resources from
each presentation.
TOPICS
Kidney Cancer Treatment Approaches
Speaker: Dr. Ulka Vaishampayan
Shared decision making
Moderator: Zita Lim, PA-C
Panelists: John Ferrell, Bruce Hill, Dr. Chung-Han Lee
Genetics And Kidney Cancer
Moderator: Sallie McAdoo, MS, CGC
Panelists: John Lee, Genetic Counselor
Understanding A New Diagnosis
Moderator: Nancy Moldawer, RN, MSN
Panelists: Chapmann Cheung, Dawne Gee, Laura Esfeller, Marissa Willis
Living With Kidney Cancer (Early Stage Diagnosis)
Moderator: Dr. Stephanie Berg
Panelists: Jason Hinojosa, Ryan Natzke, Annamarya Scaccia
Living With Kidney Cancer (Advanced Stage Diagnosis)
Moderator: Deborah Maskens
Panelists: Steven Edwards, Matty McClain
Caregiving
Moderator: Sarah Rosner
Panelists: Kathleen Campbell, Milton Wade
Disparities And Access
Moderator: Ritchie Johnson, RN
Panelists: Dr. Pedro Barata, Dr. Pavlos Msaouel, Dr. Melanie Royce
Financial Toxicity
Speaker: Monica Bryant, Triage Cancer
Diet and Nutrition
Speaker: Brittany Finley, RD
What I Learned From Kidney Cancer
Moderator: Salima Witt
Panelists: Megan Conley, Ritchie Johnson , Peggy Zuckerman
2Kidney Cancer Treatment Approaches
Understanding Diagnosis Treatment Options
(Look for some of these words to appear in your pathology report)
VEGF THERAPIES
CLEAR CELL Starving cancer cells by blocking blood flow
Multiple therapy options Usually oral
TKI/targeted options: (VEGF is most common.) Usually have higher chances of shrinking cancers
IO+IO Very small chance of complete response or long term
VEGF + IO response. (“Response” primarily means there are
indications that the tumor has decreased in size.)
NON-CLEAR CELL
Most side effects are short lived, reverse after you
Papillary most common stop therapy
Cabozantinib is preferred therapy for papillary
IMMUNE THERAPIES
Look for clinical trials
Stimulate immune therapy to attack the cancer
SARCOMATOID Usually IV
Immune based therapy Smaller chance of response
Long lasting or durable remissions
Side effects can be long lasting, and may be lifelong even if
you stop therapy
Summary
Immune checkpoint-based combinations have demonstrated Sarcomatoid RCC: Immune checkpoint-based regimens,
tremendous promise in advanced renal cancer: IO+ IO or ipilimumab+nivolumab and axitinib + pembrolizumab have
IO + VEGF-TKI. Median survival of 4 years, and ongoing shown superior outcomes to front line therapy.
durable responses were demonstrated
Papillary RCC: Standard therapy was established by
In favorable risk disease, consider surveillance or VEGF-TKI PAPMET S1500 trial. Cabozantinib is a standard treatment.
based combo.
For those presenting with primary tumor and metastases,
PD-1 inhibition is the backbone of future combination start with systemic therapy. Consider participation in
regimens in RCC S1931/PROBE trial with randomization to nephrectomy
or not.
PD-L1 expression was not predictive of clinical outcomes
with immune checkpoint therapies in RCC
RESOURCES
1. Exploring your treatment options: kidneycancer.org/explore-your-treatment-options/
2. Treatment summary sheets: kidneycancer.org/drug-information/ 3Shared-Decision Making
Defining the Importance of Shared Decision Making
It’s a process essential to all the decisions that come in the aftermath of diagnosis
Make health care decisions together, including medical team, patient, and caregiver/family
Importance of valuing the patient’s values and preferences
Medical care teams need to honor the patient’s right to be fully informed of all care options.
Importance of Shared-Decision Making
Increased confidence in treatment path
Allows for patients/caregivers to be better advocates for themselves because they feel part of the process and
understand their options enough to ask questions
Red Flags When Choosing a Medical Provider
They are against second opinions (They should encourage it!)
They don’t allow time for questions or to explain discrepancies in treatment recommendations from second opinions
RESOURCES
1. Questions to ask your doctor: kidneycancer.org/wp-content/uploads/2020/07/Questions-to-ask-my-doctor.pdf
4Genetics and Kidney Cancer
Cancer is Either Hereditary or Sporadic
The majority being sporadic
Genetic Counseling Defined
Process of helping people understand and adapt to the medical, psychological, and familial implications of genetic contributions
to disease
When being genetically tested, it’s primarily a two-visit model. First is data gathering and second visit is interpretation of
genetic test results, risk assessment, and management and screening recommendations
Genetic testing can be done through saliva or blood
Analysis of genes for germline mutations
Usually most informative when performed on family member when cancer
Germline testing is done on cells that do not have cancer. It is done to see if a person has a gene mutation that is known to
increase the risk of developing kidney cancer. They are often hereditary germline mutations which is why it’s useful for heirs.
Genetics and Kidney Cancer
Genes currently associated with hereditary RCC
VHL, MET, FH, TSC1, TSC2, FLCN, SDHA, SDHB, SDHC, SDHD, BAP1, CDC73, MITF, PTEN
Identification of several new genes/syndromes related to hereditary RCC over past few years
Many syndromes have specific connection with certain histology of RCC (clear cell, papillary type 1, papillary type 2,
chromophobe, SDH deficient, etc.)
Higher percentage of patients with advanced RCC carry germline mutations
First ever consensus panel for renal cell carcinoma genetic risk assessment.
Areas of consensus:
Patient with renal tumor and a first degree relative or 2 second degree
Genetics knowledge is
relatives with RCC
advancing rapidly. Just
Specific RCC histology because you don’t qualify for
Bilateral or multifocal renal tumors genetic testing now, keep
checking back!
First ever consensus statement for renal cell carcinoma genetic risk assessment.
Areas of consensus:
Patient with renal tumor and a first degree relative or two second degree relatives with RCC
Specific RCC histology
Bilateral or multifocal renal tumors
RESOURCES
1. Find a Genetic Counselor: findageneticcounselor.nsgc.org/
2. KCA blog post on the first consensus statement on genetic risk assessment for inherited RCC:
5
kidneycancer.org/stories/this-month-in-kidney-cancer-research-6/Understanding a New Diagnosis
Understand your histology, subtype, and stage because Clinical trials can be very important and aren’t “last
it’s important when investigating treatment options. chance”. They may offer the best first-line treatment.
Slow down! You don’t need to decide on a treatment/ Palliative care and supportive care can be useful at any
surgery the hour you get a diagnosis. Your immediate point in your care journey and does not signal end-of-life.
decision could affect future treatment decisions. Use your palliative care team early-on, as they’re best with
helping with pain management and mental coping skills.
Advocating for yourself is so important. KCA has a list of
“Questions to ask your doctor” that is a good place to start. Ask your medical care team about mental health services
that are offered.
Mental health is so important. Endorphins from working
out and staying active were helpful to this panel.
RESOURCES
1. KCA Just Diagnosed Toolkit: kidneycancer.org/just-diagnosed/
2. Questions to ask your doctor: kidneycancer.org/wp-content/uploads/2020/07/Questions-to-ask-my-doctor.pdf
6Living With Kidney Cancer (Early Stage Diagnosis)
A significant challenge is learning to keep your own identity A community was important, especially for people who are
but having a shifting perspective with a cancer diagnosis. diagnosed at younger ages who may not know other cancer
patients. Online forums like SmartPatients, which the KCA
Second opinions and shared-decision making are very partners with, is a good resource, as is KCA Connect for
important. Your doctor and medical care team should monthly virtual support meetings.
encourage second opinions.
When telling your family and friends about diagnosis, set
Everyone has a different perceptive on check-ups appropriate boundaries. Ideas include to set virtual sign-
and scans. Some find encouragement from them, and ups for ways to help, so you aren’t being bombarded with
sometimes they provide only anxiety. Talk to your health people helping in ways that are stressful.
care team about what works best for your treatment, with
your mental health in mind.
Living With Kidney Cancer (Advanced Stage Diagnosis)
Advocating for yourself is important. Ideas include: Your goals for a metastatic diagnosis may be different
Knowledge is power! Educate yourself about your own from a non-metastatic diagnosis.
cancer and biology so you can have productive discussions We do not have to only focus on NED or a cure.
with doctors/healthcare providers (asking why a certain
course of action is recommended, or not, for me and my There is a whole spectrum in which to LIVE between
specific biology) “terminal” and “cure”.
Set goals for yourself outside of cancer. (A trip, a fitness Goals can be a travel, seeing kids grow up, etc.
goal, etc.) Communicate these goals to your doctor and your
care team.
Mental health with a long term diagnosis.
You are not cancer.
Set a time on your calendar to worry. During that time you
You are a person LIVING with cancer.
can research, read Smart Patients, blogs, etc. But after
that, put it away.
The focus needs to be on LIVING with kidney cancer.
Focus on what we need to do LIVE.
RESOURCES
1. Smart Patients: kidneycancer.org/support-community/
2. KCA Connect: kidneycancer.org/kca-connect/
7Caregiving
There are many styles of caregiving and many roles a In addition, caregivers need their own dedicated networks
caregiver can fill. Some of these include being an advocate, of support that may be separate from the patients.
being a key support person, and being a buffer between the
As possible, caregivers should invest in personal time and
patient and wider communities of friends and families.
self-care.
The KCA encourages engaging caregiving communities
Develop a go-to list of ways people who want to help can
rather than relying on singular caregivers to support
help. And practice telling people what you do and do not
patients.
need.
Community Community
and Social and Social
Support Support
Healthcare Faith-based Healthcare Faith-based
System CAREGIVER Community System PATIENT Community
Co-workers, Co-workers,
friends, and friends, and
neighbors neighbors
SOURCE Caregivers: Creating A Support System, National Brain Health Center for African Americans: brainhealthcenterforafricanamericans.org/169-2/
KCA RESOURCES
1. Patient Navigator Program A 1:1 person you can call or email to help walk with you through questions.
If she doesn’t know the answer, she’ll help you find them! She can also refer you to oncology nurse call center.
kidneycancer.org/patient-navigator-program/
2. Just Diagnosed Toolkit A virtual or physical toolkit (can be mailed or accessed online) to walk with you to know what
to expect. kidneycancer.org/just-diagnosed/
3. KCA Connect An online support community that meets virtually once a month. kidneycancer.org/kca-connect/
4. Smart Patients A free online support community to engage with others impacted by kidney cancer.
kidneycancer.org/support-community/
5. Patient Video Library Kidney cancer experts answer common questions in a video format.
kidneycancer.org/video-library/
8Disparities and Access
Advocacy is a vital part of increasing awareness about Project Facilitate: A single point of contact where FDA
health disparities and of mitigating the systemic barriers oncology staff will help physicians and their healthcare
and subconscious biases preventing optimal care. team through the process to submit an Expanded Access
request for an individual patient with cancer.
Find a community within your diagnosis to help armor you
with knowledge. Kidney Cancer Association’s Project Echo
(Extension for Community Healthcare Outcomes):
Project Equity: A public health initiative by the FDA
Oncology Center of Excellence (OCE) to ensure that the Kidney cancer experts at major care centers provide
data for approval of oncology medical products adequately medical education to doctors in community settings
reflects the patients for whom the medical products are so they may offer expert-level care to their patients,
intended. The aim is to ensure that FDA-approved medical wherever they live.
products work for all.
KCA works with Dr. Pedro Barata at Tulane University
Project Community: An FDA initiative to increase and the community providers at Northshore Oncology
minority participation in clinical trials and to increase Associates and Northshore + Our Lady of the Lake in
knowledge and minority participation in genetic databases. Louisiana.
RESOURCES
1. RMC Support: rmcsupport.org/
2. Chris “CJ” Johnson Foundation: chrisjohnsonfoundation.org/
3. FDA Project Equity: fda.gov/about-fda/oncology-center-excellence/project-equity
4. FDA Project Community: fda.gov/about-fda/oncology-center-excellence/project-community
Financial Toxicity
Find a summary and additional resources here.
9Diet and Nutrition
Eating a healthy, balanced diet is important for anyone Although some foods can affect cancer risk, there is no
living with kidney cancer. evidence that specific foods can cause or cure cancer.
Your nutritional needs depend on what type of treatment There is no strong evidence that fasting or specific diets
you’re on and the stage of your cancer. improve detox process.
Eat small, frequent meals during active treatment All cells, including cancer cells, need sugar (glucose) for
energy, but sugar does not cause cancer.
Include fruits, vegetables, whole grains, and lean protein
in your diet. Weight is not a behavior.
Try plant-based protein sources. Behaviors you can modify include movement, increasing
nutrient-dense foods, adequate hydration, and stress
Be mindful of fluid restrictions and work with your doctor
management.
and/or dietician on this.
Reduce salt intake.
RESOURCES
1. American Institute for Cancer Research: aicr.org
10VOICES OF KIDNEY CANCER
What I Learned From Kidney Cancer
Prevention/Screening/Early Diagnosis
After initial diagnosis, answering
“What do I do now? What options do I have?”
Why isn’t there a way to diagnose this earlier?
I’d want to know what factors predispose a person
to kidney cancer and whether or not changes can
be made to decrease the chance of recurrence.
I wish I had known whether my doctor
had diagnosed me properly and was
knowledgeable about kidney cancer.
I wish I had known how to be a better self
advocate. Because my Crohn’s was in remission
and I appeared to be very healthy, I did not
feel I was taken seriously.
I wish I’d known if I was
genetically predisposed.
Wish I knew about the likelihood of small renal masses being benign
and about diagnostic tools such as biopsy and sestamibi scan.
I learned that carrying
sickle cell trait is not entirely
benign and that it is associated
with renal medullary carcinoma That my local urologist did not know
(RMC). I learned that having a nearly enough about kidney cancer!
history of high-intensity exercise Wish I had seen an expert sooner!
puts a person with sickle cell trait
at greater risk for developing
RMC.
11Treatment
That there
were/are many
treatment options
That cancer is so very complex in its treatment process. but few cures.
Learned that there are major I wish I’d known more about surveillance
developments taking place with protocols as they seem to vary with different
immunotherapy and monotherapy. doctors and localities. There are no standards.
Quality of Life
I learned that I can
still live a full life with I learned how to live a full life with kidney cancer rather than waiting to
kidney cancer. die from it. At first I was afraid to make any plans more than a month out.
Once I started living my life I have made 3 overseas trips traveling to different
countries, and got married! Life is good!
Difficulties encountered regarding
emotions and depression. And daily
Living in the unknown is
challenges of socialization. Living with
the challenge. Anticipation
metastatic kidney cancer. How devastating
of pain and suffering is itself
very real suffering. Getting to the effects would
cooperate with so many very be after a radical
intelligent doctors has positives nephrectomy.
I wish I’d known
that this could be and negatives.
with me for many
years to come.
That I am incredibly lucky to live in an area
with excellent treatment resources, that I really
I wish I knew how to cope after/ need to appreciate every day and am better able
what to do with my life/how to to appreciate every day than I ever was before
move on after surviving kidney being diagnosed, that the power of faith and
cancer. prayer is incredibly important in my life.
12This information is not intended to be a substitute for professional medical
advice or clinical therapy. Always seek the advice of your physician or other
qualified health provider with any questions you may have regarding a
medical condition.
CONTACT THE KCA’S PATIENT LIAISON
1-800-544-3KCA | patients@kidneycancer.org
THE KIDNEY CANCER ASSOCIATION
The global community dedicated to serving and empowering patients and
caregivers, and leading change through advocacy, research, and education in
order to be the universal leader in finding a cure for kidney cancer.
KIDNEYCANCER.ORG
@KidneyCancerAssociation | @KidneyCancerYou can also read
